smorgas_of_borg's blog

blixx-kreiged (2)

 abuse

(part two)

Naturally, Aaron asked what that meant for him. I told him he would be four feet tall or less when he was fully grown.  It didn’t seem to phase him at all. His mom seemed almost giddy about the news. “I’ll have a ‘little man’ for all of his life!” she said. I don’t think she quite understood at the time that just because he was going to be a ‘little man’ didn’t mean that he’d stay five years old forever.

It became almost a point of pride to tell people that our son was a dwarf.  Kind of like he had already won a Super Bowl ring or something, I guess. He was now a kid that already had an identity long before other kids even had an idea what theirs was going to be.

During his first kindergarten year, we noticed his left knee was moving outward.  This, we learned, was due to the growth plate defects on the ends of the long bones of his legs. We also learned that in his case the pseudoachondroplasia affected only the long bones in his arms and legs, as well as his hands and feet. From the top of his head to the bottom of his hips he was perfectly normal. 

After an exam by the ‘orthopod’ (a term we would become very familiar with in the coming years) he was fitted with a brace that was to both keep his knee from moving outward any further and help pull it back into alignment. After about a year of wearing the brace (which was removable so he could bathe, swim and sleep) it became obvious that it was doing no good.  We abandoned using it any more by the time he was six.

We noticed that as he continued to grow, both knees were moving outward markedly. It was obvious that surgery would be needed before long to correct the bowed legs. I ended up taking Aaron to three nationally recognized orthopedic surgeons over a three month period to try to get them to correct his deformity.  EVERY one of them, in spite of me telling them I had excellent insurance coverage, said the same thing: “Take him to the Shriner’s”.

Since I was not (and am not) a Freemason nor a Shriner, I didn’t really know how to go about that. As it turned out, one of my brothers-in-law was a Shriner and got the paperwork moving for us. We were very fortunate in that the Shriner’s Hospital for Children was only 20 miles away in Greenville, S.C.  An appointment, three months away, was made for Aaron to be examined there. The hospital in Greenville sees thousands of kids a year. So, getting in, unless it’s an urgency, takes some time to arrange. (and I could fill hundreds of pages with stories of the wonderful things I’ve seen done there).

The physical exam literally took all day. Mobility tests, body fluids drawn, vision, hearing tests, full body x-rays, and on and on.  His mom and I had to answer a gazillion questions and help trace family height histories back as far as we could. Aaron was obviously the first dwarf in either blood line.

Weeks later, we got reports back.  The most telling was from the genetics testing. At that time they already knew which gene was responsible. And in Aaron’s case, it was noted as a mutation. A mutation that was spontaneous and ‘unique’ in the family genetic histories. Over the next years, Aaron was seen twice yearly at the Shriner’s Hospital.

By the time he was twelve, both knees had moved outward to the point that he could not run. He often tripped over his own feet while walking.  The distance between his knees, with his feet together, was nearly enough to pass a soccer ball through.

The time for surgery had arrived.

(...continued tomorrow)

--->Return to Part One 

--->Part Three